What's It Like To Live With Chemical Sensitivities?

On this page:

Housing
Work
Finances
Social Life/Dating/Family
Fun & Recreation
Basic Material Needs
Transportation
Communication
Emotional Health

Living with Chemical Sensitivities can be anything from an annoying inconvenience to an unbearable daily nightmare depending on the severity of the condition. Someone with very mild sensitivities may be able to function quite well in society. They may experience symptoms only briefly and intermittently, and may only have reactions when exposed to extremely potent substances or very large quantities of chemicals and fragrances.

However, the experience of CS varies greatly and many individuals suffer from moderate to very severe symptoms that create radical limitations in their daily living. They often react to very small amounts of chemicals and fragrances in their environment and become quickly debilitated when exposed to common personal care products, smoke, and industrial chemicals. Many have reactions that last several days or longer after an exposure and, as the condition worsens, many become so sick that they experience symptoms all the time. Chemically sensitive people who don’t respond to treatment have to be very careful to avoid peoples, places, and things that would trigger a reaction and because of this, many become partially or completely housebound.

To fully understand what it is like to live with Chemical Sensitivities, it is important that you understand the concept of “off-gassing.” When a new product contains chemicals, it releases those chemicals into the air for a certain period of time. This is known as off-gassing or out-gassing. People with CS generally have difficulty with anything new and often need to wash and soak these products multiple times or leave the products outside or in another room for many weeks or months before they can use them. This includes new clothes, books, blankets and other bedding, mattresses and other furniture, computers and other electronics, housing fixtures, appliances, etc.

Let’s take a detailed look at how living with CS affects each area of a person’s life.

Housing

It is often incredibly difficult for someone with Chemical Sensitivities to find safe housing, meaning a home, apartment, or other living situation that will not exacerbate symptoms. There are numerous chemicals used in building, furnishing, and maintaining a house or apartment building, and for someone with Chemical Sensitivities, these can affect the body for many years after construction. They generally have to look for a house that is old enough to have off-gassed these chemicals or one that was built with natural, untreated materials; however, even then there are issues to consider. The presence of any amount of mold, which is highly toxic to the body, is especially difficult for people with CS.

It can take years to find a safe environment and because of this, many individuals end up temporarily or even permanently homeless or get stuck living in a place that exacerbates their symptoms and makes them progressively more ill due to the chronic exposure. Once a safe spot is found, there is still the trouble of finding safe ways to maintain and repair it, especially in rental situations where the landlord makes the decisions regarding what types of maintenance products to use.

The list below shows some of the many things a person with Chemical Sensitivities has to consider when looking for a place to live:

- Does the place have carpets? New or semi-new carpets off-gas many toxic chemicals, including formaldehyde. Old carpets can easily absorb and trap dust, smoke, mold, and other contaminants.
- Does the place have any mold? It can be incredibly difficult to find housing with absolutely no mold, especially in certain geographical areas more prone to it. Mold can trigger many intense and incapacitating symptoms and is a common trigger of the onset of CS.
- How is the level of outdoor air pollution in the area? Cities have higher levels of exhaust, continuous paving and other road work, and more people, which means more fragrances, smoke, etc. Rural areas can have different issues, such as higher mold and mildew in the air as well as the use of pesticides and similar products for farming and gardening. In any area, one needs to assess how close they are to neighbors and whether these neighbors use strong scented laundry products, use a wood stove for heat, or burn leaves or have campfires often? Smoke and laundry chemicals can travel quite far in the outdoor air and make it impossible for a chemically sensitive person to be outdoors, even on their own property. In some situations, these chemicals can even seep into the home.
- Has there been any recent remodeling or refinishing such as new flooring, new windows, or fresh paint? This can be an especially difficult issue - people like to make a place look nice before they attempt to sell or rent it, but generally aren’t aware that they are lacing it with toxic products.
- What kind of heat is used? Many people are sensitive to specific kinds of heat (such as propane, gas, wood stoves, etc.) and certain types (such as forced hot air) tend to carry more dust with them.
Are you going to have roommates? Do they use perfume, scented laundry products, soaps, lotions, or other problematic products? Do they use strong cleaning products and are they willing to use anything different? Do they smoke?
Do other tenants smoke in the building or on the grounds? Smoke carries through windows and walls very easily and even small amounts can cause huge problems for a person with CS.
Is there a shared laundry facility on the premises? If so, what floor are you on and how close is the laundry window to your window(s)? Laundry products are some of the most potent offenders and can affect a person from quite a distance. Also, where are you going to do your laundry? People with CS generally cannot use public Laundromats or shared laundry facilities, and unless they have the money for their own washer and dryer, many often end up hand-washing their clothes in the tub or sink.
Is the place furnished? If so, it will be important to make sure the furniture is not brand new (as it will off-gas chemicals for a long time if this is the case) and also that it has not absorbed chemicals or other contaminants from the previous owner (such as pet dander, wood stove or cigarette smoke, cleaning products, mold or mildew, and even perfume and scented laundry products).

There is also the option of building a new house with only environmentally safe and low-chemical, natural based materials and furnishings. However, this is very costly and most people with CS are very low-income because of the inability to work much (or at all), and the difficulty in obtaining SSDI or Worker’s Compensation.

There is now a wonderful non-profit called Re-Shelter dedicated to helping people with Chemical Sensitivities find and afford safe housing and encouraging the advancement of more natural building materials in home construction. Please check out their site for lots more information.

Work

People who have severe Chemical Sensitivities generally experience great difficulties in the area of work. Sometimes work exposures are what make them sick to begin with. Other times, a toxic work environment makes them progressively worse and they eventually have to leave. Sometimes they can’t find a job in a safe building or they are just so tired and wiped out from this illness that they don’t have the energy or stamina to work.

Here are some of the many substances in the workplace that can trigger a reaction in a chemically sensitive person:

Perfume, cologne, shampoo, soap, and scented laundry products used by coworkers, clients, and customers.
Cleaners used on floors, carpets, windows, bathrooms, desks, etc.
Air fresheners used in the building, especially bathrooms.
Furnishings used in the building, including carpets, furniture, and any new remodeling such as fresh paint, new flooring, etc. All of these off-gas many chemicals into the air. How new the building itself is will also be a factor.
Chemicals used in the actual work being performed, such as printers and photocopiers in an office job, pesticides and herbicides in landscaping or gardening jobs, and a variety of substances in construction, manufacturing, and many other types of work.
Contaminants in the building itself, especially mold, but also radon, arsenic, asbestos, etc. This is especially problematic in workplaces with poor ventilation.
The type of heat used (see section above).

There are very few jobs that a Chemically Sensitive person can do without getting sick, and unfortunately most employers do not recognize chemicals and fragrances in the workplaces as a serious problem. More and more, employers are implementing fragrance-free policies. These are a great step forward, but unfortunately perfume and cologne are just the tip of the iceberg. And when there is only one person in the workplace who is sensitive, the employer often does not see this as sufficient justification to take more serious action.

Finances

Because of the inability to work much or at all, people with severe Chemical Sensitivities often struggle to support themselves financially. This is much like any other disability. However, because Chemical Sensitivities is so misunderstood and widely unrecognized in the medical and legal communities, it is unbelievably difficult to get approved for Disability or Worker's Compensation, and this creates even more difficult financial circumstances. Then there are the endless doctor's bills and the cost of numerous supplements as they try treatment after treatment, desperately seeking to improve their health. Add to this the extra cost of more organic and natural personal care products, food, clothing, home furnishings, etc.

This financial difficulty causes a lot of problems for the Chemically Sensitive person, most especially in the area of housing. They often get stuck living in housing that is not safe for them (i.e. because of mold, other contaminants, or recent renovations) and end up getting sicker and sicker because of this. Many end up living in tents or in their cars, and many are almost continually on the prowl for safe housing.

Social Life/Dating/Family

Chemical sensitivities can be a very isolating condition to live with because of how toxic most personal care and household products have become. It is not too difficult for a chemically sensitive person to avoid using these products themselves, but to avoid being around other people that use them can be almost impossible. Perfumes and colognes, soaps and shampoos, lotions, creams, and many other products contain chemically-based fragrances that can trigger a reaction in a chemically sensitive person just from being in close proximity to someone who has used them. It often doesn’t matter whether the product was used that day or a couple of days before – the residue sticks to skin and clothes and continues to emanate into the air around them. The prevalence of cigarette smokers is also a big problem.

And then there are the ever-popular laundry products, most of which are incredibly toxic (dryer sheets, liquid fabric softener, and many detergents). For many people with Chemical Sensitivities, laundry products are their biggest allergy, yet they are the hardest to avoid and often lead to incredible isolation. If only these products were eliminated from the market, and nothing else, the health of chemically sensitive people would be dramatically improved, as well as their ability to socialize, work, and lead a semi-normal life. The ingredients of many laundry detergents, dryer sheets, and liquid fabric softeners contain extremely harsh chemicals, including several that are neurotoxics, narcotics, and carcinogens, and even two that have been listed on the Environmental Protection Agency’s Hazardous Waste List (see related articles by the EPA and www.sixwise.com). Someone with CS will often have a very severe reaction from being exposed to these laundry products, whether it is from sitting next to someone who uses them, walking by a Laundromat or a home where these products are being used, or simply walking down the laundry aisle in the grocery store. One other issue is that many people do not have their own laundry facilities. When using a Laundromat or a shared washer and dryer, the clothes absorb the chemicals from the products that other consumers have used. Often, people who are friends with a chemically sensitive person are willing to change laundry products so that they can safely spend time together; however, if they use a shared washer and dryer, then switching to fragrance-free laundry products might not change the smell of the clothes at all.

When spending time with friends or family, making new friends, mingling, or dating, it is virtually impossible for a chemically sensitive person to avoid exposure to these personal care and laundry products. It does not matter whether the friend laundered their outfit yesterday or two weeks ago; the residue of detergent, softener, and dryer sheets remains in the clothes and on the skin for an incredibly long time. The same is true for perfumes and colognes. Fragrance chemicals are actually absorbed into the skin of a regular user and then re-released with their sweat.

Because of all of this, a person with moderate to severe Chemical Sensitivities typically chooses to avoid spending a lot of time with people who use these products. This leads to a very small social circle and often to complete isolation. Sometimes a chemically sensitive person has no choice but to let go of valued friendships and relationships or to interact only by phone and email in order to avoid getting sick. Therefore, when friends and family are willing to change the products they use and go fragrance-free, it is an enormous blessing.

Almost everyone has experienced perfume overload. You’re around someone with a massive quantity of perfume or cologne, you start to feel dizzy or your head hurts, and you absolutely have to get away. Multiply this times maybe 1,000 and you will understand the unbearable sense of isolation that plagues a person with severe Chemical Sensitivities.

Fun & Recreation

If the chemically sensitive person is lucky enough to have family and friends who are willing to go fragrance-free, there is still the issue of where to get together. Many times these friends' homes are still not safe due to the chemicals contained in building materials (i.e. carpets, paint, floor varnish, etc.), the types of cleaning products used, pets, the type of heat used, household contaminants such as mold and mildew, and new furnishings in the home (i.e. new furniture or electronics). Going to restaurants, coffee shops, theaters, and other social venues can be difficult or impossible for a chemically sensitive person – there are tons of people wearing tons of scented products, there are smokers, and there are the industrial chemicals used in the construction, maintenance, and cleaning of the venue. Summer is often easier because people can gather outside and have more ventilation for the smells; but some chemically sensitive people have outdoor allergies as well and also have to be careful of the mold and mildew generated during periods of high humidity. Going to the movies, to a concert, or out dancing, all these are often unavailable to the chemically sensitive person unless they choose to expose themselves and likely have a reaction that can last many hours to many days. Many wear special types of masks designed to filter out pollutants, however these don’t really solve the problem because chemicals are absorbed through the skin as well. The pain of isolation from family and friends is made worse by the inability to even be out and about in the world.

Basic Material Needs

Acquiring basic material needs is an incredibly difficult process for someone with Chemical Sensitivities. The ease of going to a store, buying what you need, and actually being able to use it is simply not a luxury they can afford anymore. Shopping is usually a very substantial exposure because of the smell of the stores and all the people and products in them. Sadly, there are many stores that even pump large amounts of highly fragranced air fresheners into the store through their cooling and heating systems. For this reason, a chemically sensitive person often has someone do their shopping for them or, if this is not possible, they wear a mask and get in and out of the store as quickly as possible.

Once the items have been purchased, there is still a long ways to go. Most products are full of chemicals that have been used in their production, and therefore need to be off-gassed for a considerable amount of time before they can be used. This includes clothing, books and magazines, blankets and other bedding, couches and other furniture, computers and other electronics, housing fixtures, and appliances. Because of this, it can take a very long time to find products that will be safe for the chemically sensitive person. Some will take just a few days or weeks to off-gas, but many can take several months or longer before the person can be around them without getting sick.

Clothing is especially tricky. When bought new, it is laced with all the chemicals used in production, including formaldehyde. Clothing made from cotton and other natural fabrics often contain remnants of the pesticides used in growing the fibers. Synthetic fibers like polyester, rayon, and nylon, are chemically based and generally to be avoided. Even used clothing is a problem as it usually contains the chemicals and fragrances from the previous owner’s personal care and laundry products. People with CS have to wash and soak new clothing dozens of times before it is wearable, or they may purchase clothing made from organic fabrics and more natural production practices. Sadly, there are severely chemically sensitive people who end up spending most of their time naked.

Transportation

Transportation can be difficult for a chemically sensitive person because of the use of petroleum based fuels and the emissions that they give off. This includes cars, trucks, public transportation such as buses and trains, and even walking and bicycling because there is still other people’s exhaust to deal with. Many chemically sensitive people are able to drive but have to take precautions to ensure they are breathing in as little exhaust as possible. Because of high levels of exhaust (and other issues), many choose to live in a rural or suburban setting.

Car and truck interiors are also problematic. New cars contain new carpeting and upholstery, which is full of formaldehyde and other off-gassing chemicals. Older cars contain the smells of the previous owner(s), which can include smoke, air fresheners, perfume, cologne, or scented laundry products. Car interiors are notorious for poor air quality because of the small, contained space and because of the large amount of porous material that can absorb and trap unwanted smells. For someone who is very sensitive, car shopping can be a nightmare and riding in other people’s vehicles may not be an option.

Communication

Many chemically sensitive people also are sensitive to electric and electronic devices, such as computers, cell phones, televisions, microwaves, etc. This sensitivity occurs because of the EMF's (electro-magnetic fields), RF's (radio frequency), wireless signals (such as wi-fi) and radiation being emitted from these devices. In many instances, these fields/signals can interact negatively with the bodily systems of a healthy person, without their awareness. However, for a person whose body is weakened by other illness, the effects can become very pronounced. Symptoms occur when using these devices (or when within their vicinity) and can include headaches, brain fog, fatigue, memory lapse, emotional and cognitive disturbance, and much more. Generally, a chemically sensitive person becomes very isolated and must turn to the telephone and the internet to maintain relationships and a sense of human connection. But for someone who is EMF sensitive as well, computers and sometimes even telephones may not be an option, thus leading to even more extreme isolation. Someone with severe EMF sensitivity can also react when in close proximity to power lines, electrical wiring, appliances, and anything that uses large amounts of electrical power.

It is important to note that computers can be harmful for other reasons aside from EMF’s. Hard drives and other interior parts are largely composed of toxic heavy metals which are heated up with use and then emitted through the cooling fan. Computer exteriors are all plastic and thus off-gas chemicals into the air, especially when new. Therefore, even chemically sensitive people without EMF sensitivity often have to limit their computer use or only use rebuilt or older systems. You can find more information on chemicals in electronics at the GreenPeace Campaign for Greener Electronics.

Emotional Health

Chemical Sensitivities is a very disabling condition that can impose drastic limitations in a person's life. Many with this condition experience constant pain and sickness along with the relentless frustration of not being able to improve their health or live a normal life no matter how hard they try.

Many have had to let go of so much in their lives in order to preserve their health, including valued friendships and relationships, work, recreation, and community involvement. They may have no way of feeling connected to society or useful to the world. Many even have family and friends who don’t understand the condition and resort to criticism and avoidance to deal with it. For far too many, it may feel as if there is nothing left to live for.

There is also the constant stress of going to doctor after doctor and trying so many different treatments, especially when most doctors’ offices can make a chemically sensitive person pretty sick. Many are trying to navigate the health care system with very little energy and often, because of how little recognition and understanding this condition gets in the medical community, they end up having to be their own doctor and do a lot of their own research on top of everything else.

Add to this the enormous financial stress of being disabled by a condition that most governmental and social service agencies don’t even believe is real, and therefore being unable to get financial support or having to exhaust themselves in the process. Many can’t even afford safe housing (or there isn’t any available), and end up living in a home that is actually worsening their condition day by day.

People with CS are almost always under a great deal of stress and are constantly expending more energy than they have as they search for ways to get better, ways to avoid getting worse, ways to cope with pain and sickness, safe places to be, safe products to buy, ways to be in the world without getting sick, and ways to maintain any sense of meaning and fulfillment from their lives.

If you know someone with Chemical Sensitivities, one of the many ways you can be of help is to offer emotional support. For more information, see Other Ways You Can Help People With Chemical Sensitivities.

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